During Autism Awareness and Acceptance Month we had the opportunity to speak with many amazing neurodiverse people. I am a parent to a child with autism; my daughter is Bubbles the Cat. It’s especially important to me to share how diverse the autism spectrum is. It has been a roller coaster of emotions. We are so incredibly proud of every member of our WomANZ community for their compassion, their understanding and their acceptance.
I had the pleasure of speaking with Karsh and ChaosCat about raising a child on the spectrum. The idea of autism being a “spectrum of abilities” compounds while speaking with them however they are all connected at heart. Karsh explained to me how his son, lovingly nicknamed ‘Sid the Goblin’, is incredibly intelligent despite his inability to verbalise his ideas. He learned to read by visualising the letters as images and identifying them together. He uses assistive technology and a picture-based language system so he is able to communicate his needs and wants. We also learned that apparently there is warrant for his goblin nickname. You see, Sid is devious.
Karsh, a circus professional, proudly recalls the time his son pick-pocketed a parent at the school pick-up:
“Everyone knew that his focus was mobile phones and technology and he would sit next to people, or even sit on their laps, if they had their mobile phone out. And he watched for a while and he’d reach over and press buttons… And then he’d take it from them. One of the parents put [their phone] away as he was coming in and he saw that. He went over to her, gave her a massive big hug, just a beautifully big hug, and then he walked off, downloading new games for himself to play on her phone. Not just the fact that ‘I want this,’ but you’re not going to give it to me so I’ve got to figure a way around that. And to do the distraction. For me working with so many magicians over the years, he did it perfectly. Without training.”
ChaosCat expressed to me how her daughter, Fable, was also quite perceptive for her age. Although she is quiet, her mind is working and she is observing the people around her:
“We were kind of stressed out about her social interactions in going into primary school because she’s so quiet and she really struggles with the general social interactions. And seeing her interact with another child and say, “Hi, my name’s Fable, what’s yours?” and making friends was, like, heart-melting for me. You know those little moments make me feel a whole lot better about her being at school. Those interactions can be scary as a mum, sort of not being able to control the situation, and they’re really good moments for me where I always feel a sense of pride and belief that she can do it.”
We Talk Meltdowns
A commonality between us was the dealing of our children’s meltdowns, as well as society’s misconceptions when our child is in the state of overwhelm.
“Meltdowns are extreme emotional and/or behavioural responses to a stressful situation. They are always involuntary. Meltdowns come from prolonged exposure to sensory triggers or cognitive overload without a chance to get away from the overwhelming stimulation.” Sue Larkey, an experienced teacher specialising in special needs education, clarifies the difference between meltdowns and tantrums here.
Fable’s meltdowns are anxiety-focused; they’re inward and withdrawn. However, if she has had a hard day at school, and her sister grabs the iPad, she will scream the house down. It’s an extreme response but it’s the inability to control. She explained how Fable would meow like a cat when she was really anxious because she couldn’t cope with situations. “Sometimes people misinterpret that and they’re like, ‘Oh, look she’s being a little kitten. She’s so cute!’ And it’s like, ‘Yes, she’s very, very anxious. You need to stop talking to her now.'”
Sid the Goblin needs a lot of coaching and therapy to assist him in self-regulating his emotions.
“He used to throw himself on the ground. He used to kick and scream and cry and lash out. He couldn’t handle that emotion. And he couldn’t regulate it. He’s hitting me and trying to get away from me, for me to stop his self-harm.”
It is terrifying as a parent, watching your child lose control of themselves and not being able to do much more than hold them.
With a lot of love and energy, Karsh has helped his son learn techniques like deep breathing. The meltdowns still happen but less extreme. All of us admitted we forget, at times, our children need extra time to process things. They need time to prepare for a change in their schedule. We cannot simply run out to the shops at a moment’s notice; our little ones cannot cope with such quick changes in circumstances. Shopping centers in particular are an overwhelming place for a lot of people with autism, and we are seeing changes happen. Coles now has 256 supermarkets practicing ‘Quiet Hour‘, which offers a low-sensory shopping experience.
I asked our parents for their advice to people in our community who may see a parent and child during a meltdown.
“As the parent, you know what the child needs, you know what’s going on. You know that sometimes you just have to stay with them and go through it. An offer of help might be nice, but I don’t really know if it’s going to be something that they can do. Sometimes, the behaviour is for that attention and so walking past can be good enough,” says Karsh.